Thursday, September 24, 2009

My toothbrush clatters into the sink and I fumble to retrieve it. For three days, my legs and feet have been numb and tingly and now my arms and hands feel the same way. Plus, I have a headache and a touch of nausea. I think I have M.S.

I gaze into my own sad eyes in the mirror above the sink and take a deep breath. Stop. Breast cancer today; I’ll worry about multiple sclerosis tomorrow.

But I hope I’m not sick. I won’t tell the doctors. I'm having this surgery today, no matter what.

Downstairs, Dave is nabbing a quick cup of coffee and toast in the kitchen while I get ready to go to the hospital. I hear him closing drawers and fishing around for utensils. The cats are squalling, and he’s talking quietly, so he must be soothing them and getting their breakfast as well. The toaster dings and I can smell the coffee, but I’m not hungry. I’m not allowed to eat even if I wanted to.

I slip off my PJ’s and give my breasts, this familiar body, a last wistful look. I have a moment of panic at the thought that I’ve made the wrong decision. Again, I stop myself. You don’t have a choice. No choice. For some reason, this comforts me. I step into the hot stream of the shower. Teeth clenched against the nausea, I rub my hands together with shampoo and lather up my hair. I won’t be able to shower again for a while.

My body has gone into siege mode. I am yearning for the anesthesiologist who will take the responsibility for my health and my spirits and my family’s spirits from me and let me sleep, unaware, for three hours.

I don’t envy my loved ones that vigil. My husband has told me how weird it will be for him. I have been with him during every other difficult wait – during his brother Steve’s surgery, during his father’s crises. Dave has said, “I’ll be hearing your voice. I’ll be expecting to see you across the room. And you won’t be there.”

Our adult children, Tucker and Casey, have come to be with us for the procedure, but they are still asleep. Dave and I were told that my prep-time at the hospital would be about an hour, so they’ll join us there later. As I towel off and dry my hair, one of the cats weaves into the room and brushes against my leg. He stretches, paws fully extended, in a sunny spot on the rug. I think of the joy of having the kids here, at home, in their beds. I wish this were a normal day, a normal visit.

After I slip into shorts, a tee-shirt, and flip-flops, I re-check the canvas bag of supplies I’m bringing to the hospital. Books, magazines, socks, toiletries and Pink Bunny.

About a week ago, I decided that Casey’s Pink Bunny, a floppy, flannel, tattered rabbit that spent his best years draped over my daughter’s arm from her infancy until she was about eight, would be a comfort to me on this day. I’d thought he might be in a trunk in the attic somewhere, but I found him on the top of her closet; he hadn’t gone too far after all. It made me smile just to see him. I held him to my nose to check for baby Casey scent, but he’d been washed too many times. He was part of her anyway, part of my life as a mother, and I wanted him with me.

It’s time to go.

After stashing my bag in the back of the car, I settle in and buckle up. Dave slides behind the wheel, but then, as usual, darts back into the house. He is gone. Still gone. Still gone. Oh, for god’s sake. Where is he? I get out of the car and march to the back door just as he re-emerges. “I can’t find the directions to the hospital,” he says.

“You just printed them out, “ I manage to bite off.

“I know. They’re on a folded piece of white paper.”

“Is it in your pocket? On the kitchen counter? On the dashboard?”

“No. I’ve looked everywhere.”

“Jeez, Dave. What’s it like to be you?”

“Hard sometimes. “ he says ruefully. “But I think I remember how to get there.”

“Oh, that’s just great.” I’m trying not to snarl because my dearest of men may be suffering more than I am. He has been so brave, never voicing a word of doubt as to the outcome of this surgery. But I know where my mind would be if our positions were reversed and I would be sick with fear at the possibility of losing him. So I am stone silent. Clenching. In annoyance and my efforts not to throw up. My head hurts and the back of my neck has tightened into a rigid bar. Like a junkie, I dream of release and that needle in my hand.

We arrive at the hospital without a glitch. While I sign in and complete paperwork at the reception desk, Dave calls Tucker and Casey to give them our status. He’s still on the phone when a lovely little woman with kind eyes and wispy white hair appears at a side door and calls, “Eleanor?”

I fish my book and Pink Bunny out of my bag. “Right here. And it’s ‘Lea’” I say automatically as I wave at my husband and rise to follow her.

“Wait,” says Dave, his head angled to hold the phone, his eyes desperate at my sudden departure. He reaches for my hand and I walk back to give him a quick peck on top of his head.

“Oh, you’ll see her again before the surgery,” my escort says pleasantly. Once we’ve left the waiting room, she adds, “My name is Louise and I’ll help you get organized. How do you feel?”

I don’t like to think of myself as a whiner, but I run through my lengthy list of afflictions, trying not to sound too obnoxious. I don’t mention my worry about M.S. by name.

“It’s the nerves,” Louise assures me. We turn down a corridor and she directs me into a narrow room lined with lockers and a low bench. She hands me two plastic bags, a pair of gray slippers, a robe and a johnny gown – the same blue diamond pattern on white that I’d worn for my colonoscopy last summer, I note. “Put your clothes in one bag, shoes in the other. The johnny’s worn open to the back. Once you’re dressed, let me know. I’ll be right outside.” She indicates a door to the right and says, “And there’s the loo, if you need it.”

I do.

I’m never one to pass up a toilet if offered, so I sink to the seat for a moment and then turn to my knees. Dry heaves. Yuck. But I feel better.

Louise’s voice comes, muffled, concerned, through the door. “Are you all right? There’s a pull cord on the wall if you need help.”

“I’m okay. I’ll be out in a sec.”

Deep breath. Deep breath. I am okay. I get to my feet, flush the toilet, and wash my hands. I straighten the johnny, pull on the thin robe and open the door.

I grab my book and Pink Bunny from the bench and Louise puts the bags with my clothing and flip flops into one of the lockers then leads me around a corner to the first in a row of glassed off cubicles. “Make yourself comfortable,” she says, settling me into an upholstered blue recliner. She unfolds several heated beige blankets and tucks them around me. After taking my blood pressure and temperature, she says, “A nurse will be here soon. Was that your husband with you?”

To my nod, she says, “I’ll get him for you.”

I’ve been holding on, waiting for her to leave, to indulge in some tears. They break through. “Oh, Dearie,” she says, just like my mom would have.

“I think I need to be alone,” I say. “Just for a bit.”

She leaves me with a gentle look of sympathy and I bury my face in Pink Bunny. What a relief to be here, finally. Sobbing, by myself, in this semi-dark room in my nest of blankets. My public face of two months no longer necessary. Today, I hand it over. Time to get this done.

A nurse with a clipboard comes in shortly with Dave close behind her. He smiles, with relief it seems, and gives me a one-armed hug so as not to block the nurse as she checks the plastic ID bracelet I received at check-in. He stands beside me, a hand on my shoulder as the nurse runs through a list of questions and says, “And you’ve had nothing to eat or drink since midnight?”

Shit. No one said anything about drinking. I’ve had boatloads of water so I wouldn’t be hungry, but I’m admitting nothing that might postpone this surgery.

“Nope,” I answer definitively.

Official business complete, Louise returns to lead me to a stretcher in a corridor. There is a flurry of yellow snapdragons and bustling cheer, incongruous in that stark setting. It’s Carey, my college roommate and dear friend, sprightly and perfume-scented with her so-short streaked hair and red-lipsticked mouth, eyebrows raised, smile-brilliant, as welcoming and happy as if she were greeting me at a restaurant for lunch.

Except I know how worried she is. Her public face outclasses mine. I’d seen the color drain from her skin when I told her my diagnosis. She has called me every day, after every appointment. “We are in this together,” she has said.

And then my kids are here, both with set, forced, “everything’s going to be fine” smiles, the same smile I’ve worn for a month now myself, and I dissolve, weeping on Pink Bunny.

Like an honor guard, Carey, Tucker, Casey and Dave walk alongside my stretcher as I am wheeled to radiology. They stand back as Gina, dark-eyed, tan and enthusiastic, steps in for Louise and pushes me over the threshold. The door closes slowly on my family, their faces remaining in the diminishing space between the door and the jam mouthing “Good luck! Love you!” until the crack disappears.

“This will burn,” says the doctor administering the dye. “We need to mark the path from which the sentinel node drains.” At least I think he says something like that; even without anesthesia, a fog has taken me. But I feel the burn and it hurts. Tears run down my cheeks and Gina squeezes my hand kindly, but says, “Oh, now. Be brave. No need for that.”

Excuse me, bitch?

Once the dye procedure is finished, I’m wheeled back to the hall. Steve, Deb, Dave’s mom and my friend Joan have joined the others. They line up beside my stretcher with words of love and encouragement. Steve leans over to hug me, then turns away. He had prostate surgery four years ago. This is hard for him; he is right there in my head with me.

I am wheeled somewhere else. I’ve lost track of corridors, cubicles and waiting rooms. The Team – my team – is waiting for me: the surgeon, Dr. Philipson, and the plastic surgeon, Dr. Alton. Strong, competent, blond, beautiful women in blue scrubs and confident smiles. In my mind, their feet are planted squarely, hands fisted on hips, capes flowing behind them. They will take care of me. I know they will.

Off to the side, leaning against a counter, is a guy with blue eyes wearing a shower cap. Only, it’s not a shower cap, he’s in scrubs. “Just waiting my turn,” he says with a grin.

It’s Ben, the anesthesiologist. The man I’ve been waiting for. He sits down beside me, close, face-to-face. And I don’t have to worry anymore.

Friday, September 11, 2009

Mom and Dad already called this morning to sing “Happy Anniversary” to Dave and me. I beamed, teary-eyed, as I always do for their milestone calls, in hearing the smile in Mom’s cheery soprano and the love in Dad’s rumbling bass accompaniment. We just hung up the phone. It’s 11:45 AM. My parents have no way of knowing I’ll be calling back in fifteen minutes, as pre-arranged with my sisters, to tell them the bad news.

I’ve known for certain for about three weeks. I’ve had biopsies and an MRI. I’ve talked to a number of my surgeon’s patients – wonderful women who encouraged me and generously described their experiences. I’ve decided on a double mastectomy, even though only one breast is affected, so I don’t have to do this – or worry about doing this – again. I have a surgery date – July 1. And I have words like “Early stage, non-invasive, inter-ductal cancer.” I wanted to know as much as possible before telling my parents and my children, Tucker and Casey.

My dread of these conversations has clouded each day almost as much as the diagnosis itself. I’ve cherished the fact that my role as the chatty daughter and strong, supportive mother is intact. I’ve marveled before at the success of my public face, but in this case the mask is not a disguise as much as a happy refuge where doctors have not yet weighed in.

I told my two sisters, Rita and Francie, a week ago. I wanted to give them time to absorb the news so they’d be ready, calm and informed, when Mom and Dad found out.

The three of us came up with a plan: Francie and her husband Matt would arrive at Mom and Dad’s just before noon so they’d be there when I called. Rita would be available in the afternoon, so Mom could rehash, as we knew she’d wish to do, later on.

It has not been an easy year for my parents. They’ve lost several lifelong friends and had their own health issues to deal with. I marvel at their stoicism. They mourn these losses, but still, when I call, they answer with exuberance. When I’m older, I want to be that way for my kids. When Tucker and Casey ask, “How’re you doing,” instead of responding with blood pressure numbers or an update on my aching back, I hope I remember to answer, as my parents do, with a good natured, “Fine! And you?”

It’s 11:55. Francie calls on her cell to tell me that she and Matt are pulling up to the house. I wait five minutes so they can park and get in the door before I dial the same number I have dialed since I was ten years old.

Mom answers. “Lea! Hi! Francie and Matt just dropped by.” So happy to have two of her girls checking in at once.

“I know, Mom. Could you ask Dad to get on the line too?”

In prior discussions, Rita felt strongly about this. She thought it would be too scary for Dad to hear only Mom’s half of the conversation; to see her face drop – maybe see her cry – and not know what was happening. He gets everything second hand. Ever since we were kids. He’s always across the room saying “What’s going on?” as Mom gasps into the phone and says, “Heavens, Dearie, how exciting” or “That’s awful!”

Clearly, Mom’s antennae are tingling; I don’t think I’ve ever asked Dad to join her on the phone. “Is everything okay?” she says.

“I’ll tell you all about it, Mom. Everything’s fine. Is Dad on yet?”

“Just a sec. Paul?” She calls, “Pick up the phone. Lea has something to tell us.”

Pounding. My heart. I hate to do this to them.

“Lea? Is that you, beloved child?” says Dad.

I picture the four of them – Mom, Dad, Francie and Matt – waiting in my childhood home to hear what I have to say. I am pretty sure that Mom picked up the phone in the “New Room,” a modest sitting room so named about forty years ago when it was re-decorated, the stucco walls painted pale yellow and the furniture refreshed with blue and green slipcovers. In my mind’s eye, my mother perches in the straight-back wooden chair by the phone, her silvery hair pulled back in a colorful hairband just as she’s worn it since she was a child. My sister, perhaps with one finger twirling a strand of blond hair, watches from a seat on the sofa in front of the window.

In the den, where I imagine Matt and Dad have settled, the shelves that held red leather volumes of the World Book Encyclopedia when I was young are now laden with antique toy cars, boats and tiny figures waiting on an old-fashioned train platform. Across the room is the bar, a wooden dry sink, scarred and scratched where I used to poke at it while chatting on the phone with my best friend, Edie. My father, I feel sure, sits heavily in the red and white striped overstuffed chair in front of the window, his usual spot, while Matt probably sits in the matching loveseat.

“Are you all right?” Mom says.

I take a deep breath and spell it out. Boom, boom, boom. No breaks between words. Facts, dates and reassurance. I don’t cry. Thank god, I don’t cry. In fact, I think I sound pretty chipper.

Dad, whose feelings spill easily into tears, holds it together, asking questions and saying, “I see. Okay,” at my answers. Eventually, he says, “Courage, Child” and hands the phone abruptly to Matt. Mom is worried and weepy. Both are brave.

Just as I knew they would be.

* * *

Despite her dancer’s posture and athletic strut across the concourse of Grand Central station, Casey’s pale skin and dark-circled eyes convey fatigue. Her tight yoga pants and camisole are black; “Pilates” is written in white across her chest. Her auburn hair is clipped back in a loose knot that bobs when she pauses to cough into the crook of her arm. I can hear her hollow, chesty hack from where Dave and I wait on a stone staircase.

We’d planned all along to take her out to dinner this weekend – and tell her about my cancer – because we knew we’d be in the city for last night’s party. Then, she called a few days ago, her voice plaintive, to say, “I think I have the flu, Mom. My roommate will be away; I’m sad about Zach and I don’t want to be alone. I don’t want you and Dad to catch this, but I want to come home.”

Besides her illness, my girl is still grieving about her break-up with her boyfriend. I wanted her to come home. I love the fact that she still finds comfort with us. Plus, there are few things that anchor me so completely as having my kids home in their beds. But my surgery is in two weeks: I cannot get sick. So I called Debby, my sister-in-law, who’s a skilled nurse practitioner and asked her advice.

“Of course you want Casey home,” she said. “But wash your hands regularly with soap and water. Don’t kiss her on the face and don’t let her kiss you. And don’t hug her.”

My daughter is sick and sad and I can’t hug her? This is going to be hard.

I’m still wondering how to avoid that hug as she joins us with a weak smile. I hold my breath, lean over and brush her cheek with mine. “Hey Sweetie! You feeling any better?” I say.

“A little. I had two pilates clients this morning so I’m kinda wiped.”

Dave gives her a good, big, real hug. “How about some coffee for the ride?” he says. “We have time.”

“That’d be great, Dad.” She grabs her rolling bag and the three of us stroll down a corridor to Oren’s Coffee Shop. Dave goes inside to order and Casey and I wait by the door.

When will I tell her about the cancer? My girl who’s sick and sad? Who needs my comfort, not more sorrow. On the train? Tonight? Now?

Pounding. My heart. I hate to do this to her.

“I’m having a mandatory boob job July 1.” I blurt. I came up with that opening line weeks ago. It opened the door. It sounded harmless. But it told the story.

“Wha… Mom?” Her eyebrows arc as she tilts her head, her eyes puzzled. “A boob job? I don’t get it.”

“I have… a little breast cancer,” I say apologetically. For that is how I feel. So sorry. Sorry that I’ve brought this into her life. Into our lives. I roll out the spiel, watching my daughter’s face tighten from confusion to worry… to tears.

“A little breast cancer? What do you mean “little”? Mom, I can’t look at you and believe this. You’re so healthy. How could this happen?”

I’ve wondered myself, but there’s no answer.

“Everything will be fine, Sweetie. I’ll be fine. It’s just lucky I had that mammogram.”

Dave returns with our coffees. “I told her,” I say. He nods and we turn toward the ramp to walk to our train, but first, I hug her for a long time.

* * *

Tucker has been serious about life and his work since he was very young. While other kids were out playing, he’d be bent over his homework or the computer, absorbed. I’d encourage him to join them. “Come on, Lovin’! Go outside and have fun!”

Without looking up, he’d respond, “I am having fun.”

In college, again, he was wed to his work. I remember once I said, “Tuck, lighten up! This is the time life gives you to be a kid.”

He snorted and said, “Mom. I haven’t been a kid since I was ten.”

And in a way, he was right.

So, I knew that my level-headed son would take this news as well as anybody. That he’d listen to the information, process it… and believe it. That last part is important for me now, too. I want to believe the “non-invasive, early stages” stuff, but how do the doctors really know until they get in there?

Anyway, Dave and I had a long-standing plan to visit our son and attend a reading by two authors at a bookstore a few blocks from Tuck’s apartment. When my diagnosis was confirmed, we decided this would be the time to tell him. My poor boy – little knowing that this delightful parental visit would be an ambush.

As always, when we’re about ten minutes from Tucker’s place, we call him on our cell phone to let him know we are close. We arrive just as he is getting off work, about half an hour before the authors’ presentations are due to begin. With near perfect synchronization, he strides into view as we park the car on his street.

“Hey Mom and Dad!” His smile is broad, happy to see us, unsuspecting. I reach up to hug his tall, skinny frame. “Hello, my lovin’.”

“Hey Boy!” says Dave.

Oh this is so weird. The three of us so cheery. So normal. Yet everything has changed.

“We should head over to the bookstore,” I say. “These guys are pretty well-known. It might be crowded.”

As it turns out, it isn’t. We have plenty of time to purchase some drinks and muffins at the snack bar before sliding into the second row of folding metal chairs set up in the back of the store. Almost immediately, Dave makes friends with an older couple sitting in front of us. As they talk about the ease of city life and the convenience of walking everywhere, Tucker peels the paper wrapping off his blueberry muffin and I open a bottle of water.

Pounding. My heart. I hate to do this to him.

When will I tell him? Now? At dinner? Tonight?

I am counting on my boy here. He will take it well.

“Tucker, I might as well just come out with it.”

He turns to me with a bright smile, expectant. Why not? I’m good at this now. There is nothing foreboding in my demeanor or expression. I’ve told enough people that the words roll off my tongue with brisk confidence. I even laugh at the end of the stream of information and say, “Not exactly what we’d planned to do this summer.”

His smile lingers for a moment, an expression leftover when it’s meaning has flown, before his brow furrows and his eyes darken. “Oh my god, Mom. How long have you known? Are you okay? I can’t believe you’re able to laugh about it. ”

“I’ve had a month to think about it, to make some sense of it. And yeah, surprisingly enough, I’m okay. I’ve been lucky all these years. Everyone has hard times; it’s my turn, I guess.”

“I wish you didn’t have to go through this,” says my son as he puts an arm around my shoulder and pulls me close. We remain still and quiet as people file into their seats, as Dave chats with the couple about their travels, as the first speaker shuffles his notes at the podium.

About Me

Quotes that I love

From My Grandfather’s Blessings by Rachel Naomi Remen, M.D.

“Life offers its wisdom generously. Not everyone learns. Life asks of us the same thing we have been asked in every class, “Stay awake,” “Pay attention.” But paying attention is no simple matter. It requires us not to be distracted by expectations, past experiences, labels and masks. It asks that we not jump to early conclusions and that we remain open to surprise. Wisdom comes most easily to those who have the courage to embrace life without judgment and are willing not to know, sometimes for a long time…”

Mahatma Gandhi:

“We must be the change we wish to see in the world.”

From the Desiderata:

“Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here.”

An old prayer:

“Days pass and the years vanish and we walk sightless among miracles. Lord, fill our eyes with seeing and our minds with knowing. Let there be moments when your Presence, like lightening, illuminates the darkness in which we walk. Help us to see, wherever we gaze, that the bush burns, unconsumed. And we, clay touched by God, will reach out for holiness and exclaim in wonder, “How filled with awe is this place and we did not know it.”